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Chapter 1: What insights do brain scans provide about ADHD and movement?
It's July 2022 and I'm about to enter a 3T GE MRI scanner.
It's as impressive as it sounds, basically a super powerful magnet, tens of thousands of times stronger than the Earth's magnetic field.
So that emergency bell will just sit on your tummy because you're going to be holding both of these controllers.
I was entering the scanner as part of a study exploring something deceptively simple, fidgeting, and how it might actually help the ADHD brain.
All right, any last minute little adjustments or anything? No, I think we're good. Perfect. We'll start moving in.
Inside the scanner, it is extremely noisy. Not a fun experience, but the study itself is huge, so the discomfort is worth it. Four years ago, when I lay in that scanner, the findings were in their early stages.
Now, the results have the potential to make a real difference, not only to how we diagnose this neurotype, but to how society views those of us who are the daydreamers, the fidgeters, the interrupters, the complex but wonderful people with attention deficit hyperactive disorder.
If your child is neurodivergent, or if you are yourself, there's an overriding sense that people don't really take it seriously. No matter how great the challenges are, they are largely invisible and often unpredictable. Even those who are diagnosed in adulthood as autistic or with ADHD can find it hard to accept and often suspect they've inadvertently gamed the system somehow.
It's really hard to believe that it's not just a character flaw. But science is advancing quickly and we're reaching the stage where there are clinical tools to use alongside evaluations. Scientific research that is moving out of the lab and reaching real people to give them an understanding and to improve their outcomes. And Aotearoa New Zealand is leading the way.
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Chapter 2: Why do individuals with ADHD struggle to hold multiple ideas at once?
But what hadn't been established is there's actually an easy fix.
That showed, as you know, that if they jiggled, wriggled their toes, used the spinner device, then the blood flow prefrontally, the oxygen uptake came back up pretty much to normal. Whereas in the non-ADHD group, it drops. Fiddling with something was a distraction to them. So...
That teacher in the classroom who looks at the kid who's being distracted or bouncing all over the place or just simply daydreaming when they talk to you and says, sit up straight, look at me in the eye while I'm talking to you, is doing precisely what it takes to make that kid not hear what they're saying at all.
Whereas the teacher that allows the kid to sit down here looking at their book, doodling and so on, is much more likely to have the kid listening to them, following them, processing them.
Many teachers intuitively know this stuff, even if they don't necessarily know the biology behind it. Movement, or even better, aerobic exercise, boosts dopamine activity by increasing blood flow to the brain. But also, just as importantly, it boosts something called BDNF, brain-derived neurotrophic factor. It's a protein that helps form connections in the brain.
And learning memory is about forming connections and strengthening those up. And this now helps to start demonstrating some of the reasons why that works. And yeah, we should be educating teachers about this furiously.
And I think the beauty of that study is that these are things probably we all knew, I'm sure a lot of teachers knew, but until it's kind of in black and white, until a scientist has said, look what we've found, there's still that thing of, yes, we know it's harder for him, but everybody knows the rules, just sit still. And it's validating, I think.
That's what I, as a member of the ADHD community, I was like, this is something that we can go... Look, here it is. Scientists have found this. I don't know why it should be different, but something that's measurable tends to get better traction.
Yeah, that's right. And here's a brain scan. So who are we to argue with a brain scan? It's super science. The experience teachers might have said, whoop-dee-doo, tell me something I haven't known for the last 30 years. But yeah, it's nice to be able to link the two. So we've got the science to justify that.
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Chapter 3: What scientific advancements are being made in autism research?
Yeah, you can have this thing in your mind, you can have that thing in your mind, you can't have both. And these things don't appear in diagnostic criteria, but they are vital to human function. So all those executive things that you see not working in attention deficit disorder are are really, I think, secondary to not being able to hold on to data and consciousness.
Doesn't mean you don't have the intellectual capacity to do so, but the system just doesn't work for you. So living with all that creates stress. What we understand is that from the process of epigenetics, if you elevate cortisol chronically, that feeds back into the brain and can add little radicals onto DNA. The salience network starts to lose connections.
So we know from other severe stress environments like American soldiers doing four or five tours of duty in Iraq and Afghanistan and having severe PTSD that parts of that network can actually shrink anatomically, sometimes as much as 10 to 15%.
So if you're ADHD, you have a salience network that's not telling you what's relevant, and that causes stress. So there's a knock-on effect because stress lowers levels of that protein BDNF, and the salience network needs BDNF to form new connections.
Is it nature? Is it nurture? No, it's how these two things interact to create a whole lot of secondary biological changes, which then are characterized by mood-related changes. What's the only logical species survival thing to do? You start assuming everything's negative until proven otherwise. And that can happen at all kinds of levels.
An example Gill gives is the adolescent girl whose ADHD is missed early on because she might be a bit of a daydreamer, but she's not disruptive and she's smart enough to get through, in primary school at least. But then in high school, not only does the work get tougher, but friendship groups become more important and more complicated.
And if your brain doesn't always tell you what to prioritise, it can have a big impact in lots of areas.
School becomes a noxious environment. That girl comes along miserable, depressed, out of sorts because she's been socially excluded. Another stressor. And she presents with depression, anxiety, maybe even cutting herself at 13, 14, 15. And people start focusing on the depression, the mood disorder. Or does she have a personality disorder?
Because that's the default when people are cutting themselves. But really, it's nothing to do with any of that. And even then, within that context, cutting themselves is often a real sign of that salience network dysfunction.
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Chapter 4: How can identifying genetic variants change lives for families?
are quite frankly very traumatised by what's happened in their life. They've gone years, decades for many people having very traumatising experiences and being very excluded by society, that having that diagnosis, having something that is confirmation, I guess gives that closure and finally understanding that This is genetics. It's in our brain. This is how we are.
This is just how we experience the world. It's not our fault. It can be very, I think, freeing. Having a diagnosis helps understand you better, helps understand your family better, your interactions throughout life.
The way it works is Jessie and her team take a sample of an individual's DNA and look for changes in genes they know are associated with autism. And sometimes not only do they get clarity, they get connection.
The amazing thing is they go around the world and connect with other families. They can share their lived experiences and they can figure out, you know, how they can, you know, what the future looks like, what things have worked for other people. And I think that's a really lovely aspect that's come from it as well.
So is what you're saying, this is fascinating to me, but I might have it wrong, that you can identify changes in a specific gene, that individual or family can find other people with that same change and they're likely to have similar experiences or presentations or there's, yeah?
Yeah, often, not always, but overall, yes. There's hundreds of genes that underlie autism. Usually no one individual has hundreds. There's usually one gene per person, if we can find it, a change in a certain gene in an individual. That's a very simplistic view of it, but it means that they can connect and become experts and then they can tell the clinician, this is what it's like.
Were the genes already identified or was that part of your work?
So it's a bit of both, actually. So there's lots of research groups that have been working on this, and we know there's about 100 different genes that we know for sure if you have certain changes in them, they might underlie autism. But we're also still discovering more and more all the time because it's complex.
It's really different from something like Huntington's, for instance, which we know it's one gene involved and one variant in that gene. So it's a bit of both. It's kind of exciting when you discover new things.
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Chapter 5: What ethical considerations are important in autism research?
That's so interesting. And a range, like, you know, 80-year-olds that we have, you know, that want an answer and you find something. And, you know, it's not necessarily going to change how they live their life, but it was really nice for, you know, those people to have an answer to, I guess, help them understand their journey a bit better.
And how easy is it to then explain to a family to take that sequencing process I don't know, what do you have? Like a piece of paper with numbers and letters and go, okay, this is what this means. How do you do that? Yeah, well, fortunately that's not my job. And this part is key. The team includes a range of specialists, each trained to handle a different part of the process.
And that team includes Ruth Monk, who makes sure the interests of the autistic community are front and centre. Ruth is also an acclaimed clinical researcher, and straddling both worlds, understanding the nuances of each, is really valuable.
Definitely when I was coming through my studies, genetic research was very much you do genetic research so you can find the gene and once you've found the gene, then you can find treatments or cure, which is the opposite of what we're looking at for autism. We're not looking for a cure for autism or treatment for autism because autism itself is not something that needs to be cured or treated.
Autism research and genetics can be done in a way that can be harmful and
has the potential to cause harm. The autistic community has a long history of being mistreated and dehumanised. And unfortunately, if you look to the US, this is still happening. So there's a huge responsibility on all researchers in this field, not only to ensure they're not causing harm, but also to make sure that any data and findings are protected. And in this study, they are.
But yeah, for our research, everything's kept in-house. We don't share to any big databases, partly for that reason too. But it's hard. I think a lot of it comes because this technology develops so rapidly, so rapidly that I think a lot of the ethical framework is still a little bit running to catch up about how we do it. Scientists can do better.
Everyone can do better at trying to do our best by individuals that are being part of, graciously being part of our research.
Yeah, that very much goes into the whole idea of autistic people needing to be involved in, not just involved in research as participants. Like, yeah, I've said it before, like it's your research, but it's our lives and it's our lives being impacted. And so...
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